Fiction, thoughts and creative writing by Rachel Carter

The Devil and the Deep Blue Sea

by Rachel on 22/01/2015

How Autism Burnout sits away from depression
Partly because of the immense gratitude I feel for all the concern and messages of support I received a few days ago, and partly because of my solidarity and commitment to my autistic readers, I felt a kind of duty to update my blog today. I also didn’t want to leave the last post hanging in the present because it was of that day and that day has gone.

After an online chat today with fellow aspies about autistic burnout and the confusion with depression, I have a renewed determination to get something, if not straight, a little partitioned perhaps on behalf of us all.

My last post 6 days ago (it seems like so much longer), was rather desperate.
But if I hadn’t written it down, I think I would have almost forgotten about that day – or at least quite how frustrated and paralysed I had felt. Soon after writing it I felt ashamed and embarrassed. How could I be so exposed? So powerless?
I was quick to move on and work on solutions for repair. I didn’t like that version of me and I didn’t post the piece to my front page but left it in the January archives to be forgotten. Nevertheless, I don’t regret writing that post. The difficulties we experience need sharing and airing and when we find others experiencing similar we feel a little vindicated somehow. So now I want to come back and share how quickly it was all over and how quickly I repaired.

One word I used to describe how I felt the following day was “stronger” – as if on the day of my blog post I had been somehow weak. But what keeps chiming again and again in my head is how strong I had actually been; how I hadn’t been weak at all.

I think it more appropriate to describe the way I felt as “battling”. You see, the very word “weak” must imply a lack of strength. A fisherman in a storm doesn’t wreck his boat because it or he is necessarily weak. A man killed by a tiger doesn’t die because he is weak. A grand old oak doesn’t become uprooted in a hurricane because it is weak. A woman doesn’t scream in childbirth because she is weak. Things hurled themselves at me, I fought, I became exhausted but I didn’t give up. I simply took some time to scream (metaphorically) and make it known that I wasn’t enjoying the experience.

What I was was honest.

As an autistic person, the main problem I have is actually telling myself to stop trying to be stronger. I am used to battling, used to finding everything hard work, used to being exhausted, used to having unexplained health problems. When I’m asked if I find something difficult, I don’t have the same reference points as the person I’m talking to: it’s all difficult. But I didn’t know that. I thought that was just how life was. Difficult is my normal.

What all this means is I have episodes or periods of burnout. And these episodes of burnout are similar to depression to look at from the outside. But it’s not the same. Not for me anyway. And, after having a couple of years being convinced I must be depressed, and reading other people’s experiences, and then eventually reading about autism, I can see significant differences – and not least in the solutions. I must add – importantly – that I’m not excluding depression. I can see how many people after years of struggling with autism are depressed, I know that depression hits people from every walk of life and I’m not excluding autistic people from those who might experience depression. I can see how depression and autism get mixed up and sometimes overlap. But they can also be separated.

I have anxiety. I have autism. I don’t have depression.
I get frustrated. I get sad, yes, but I don’t have the long periods of darkness, of despair, of the hopelessness that can be so dangerous.
I feel debilitated by social exhaustion. I feel overwhelmed by over-stimulation. I feel trapped doing things I can’t control or I can’t stop.

At the risk of sounding ungrateful, the advice people give me for dealing with depression doesn’t really work. And that in itself must be a clue.

I tried to think of an analogy for the way a burnt-out autistic person might feel and how the fix works, and the image of a hamster wheel came to mind (this might be because I saw one on TV last night!).

So let’s try this…

An autistic person pushing themselves for too long can feel as if they are trapped on a hamster wheel. They can run at good speed around and around and around. They’ll look as if they are doing well. But at some point they will feel like they really can’t go on any longer, and one of the first things you might notice is that they stop communicating.
A neuro-typical or non-autistic person might de-wheel, eat, have a chat with a friend, have a sleep and get back on again. When they do get back on (even if it’s something they don’t particularly want to do), they’ll feel the benefit of doing something else for a while and will feel re-energised by the socialisation. They’ll look for support from others by distracting themselves with chat.
Not so for an autistic person. Because of the sensation of never-ending movement we will find eating, sleeping and socialising difficult. Lights will seem too bright, noises will scratch away at us, and thinking clearly will become progressively more difficult. We will fear the hamster wheel and want to run away. There will be an overwhelming and overriding instinct that everything must stop and we must obey our instincts: get away from the noises, away from the lights, away from the people, away from the feeling of going around and around and around. Of course society tells us we must get back on the hamster wheel – so many of us do, but each time we do, we feel more and more debilitated and less and less able to function. The best thing to do is block out every single other thing in life and concentrate on the one and only thing we are not allowed to stop doing: the wheel. From the outside we look moody and unsociable but physically capable. This is because in order to concentrate on one important thing we have suppressed ourselves.

In my opinion this is where autism looks like depression and where it might, indeed, eventually lead to depression. But I think the significant difference is that it is caused. And there’s an almost formulaic process and reaction: Fighting back tiredness plus coping with sensory stimuli plus dealing with repeated socialising equals burnout.

When we were trying to work out why I was sometimes not coping with seemingly simple or enjoyable activities, I had some assessments with the depression and anxiety clinic. What they discovered was my reactions to questions (repeated over a period of time), and my attitude to life and myself did not fit the expected reactions of a person who experiences depression. But they were very much the reaction (and to the extreme) of an anxious person. My fear responses are so enormous and my ability to cope with life relies on so much hard work from my adrenal system that I crash every now and then. In fact I have to crash. Autistic people have to stop. I mean just stop. It’s complicated to put into practice because of modern life and the way society works but it is in fact very simple. It’s learning that and accepting that which are so very, very difficult. If you don’t know that it’s autism, you reach for something or someone to blame and depression is often the nearest fit. Sadly it’s often common to blame partners, friends, jobs and whatever is going on in our life right now too. The immense sensation that something is broken, something is wrong and something desperately needs to change, and change quickly, can have us ending relationships, packing in jobs and breaking valuables in our endless quest for a fix. Often a massive meltdown -including screaming, slamming doors and insulting loved ones, can give us just that fix we need, and leaves us with nothing but the all-important solitude we perhaps didn’t realise we were craving. It’s not the best way to go about it though.

My frustration at having to crash, stop, give up, back out, cancel and reorganise makes me sad. Sad: yes. And sometimes despairing. But like a bitter pill (and let’s face it, better than any actual pill), it works.

So, importantly, the fix is about letting go and being allowed to stop everything and not trying to add more and more in an attempt to make things better. The useful mood-lifting, adrenalin-giving activities we might get prescribed by our friends with knowledge of depression might actually be piling more on our already over-full to-do list.

What we/you/society needs to say to someone with autism burnout out is ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

And then sit back (sometimes at a safe distance 😉 ) and watch the steam escape!

When I felt the burnout last week, I did nothing for a day. Because we are all individuals, I can’t say what this period of “doing nothing” means for other aspies, but I do know that despite being called “doing nothing” it will be anything but. The brain will be very busy until it has offloaded. I wonder if it’s because we can’t kick out memories of recent events and conversations the way non-autistic people can or resign recent happenings to a deeper more distant part of our memory banks that this happens. We struggle to move on, to clear our thoughts and to wipe images from our visual memories. After a social event, for example, at which I may have performed very well and have enjoyed very much, I can still see the faces of people I have been talking to for hours or days afterwards. I can still hear the conversations, and certain spoken phrases will play out again and again in my brain. I can still see pictures on the walls, the expression someone made as we talked so that it’s like I’m still experiencing it. Perhaps this repeating means I need a longer period of processing and moving on than neuro-typical people. Maybe all autistics need a time for sitting still and letting our brain-wiring fizz out at as it crackles on at its own unique speed.

With this unique fizzing out delay, trying to continue to do things means we are adding more and more to the jumble and chaos already going on. And taking time alone is essential. Depending on the severity of the burnout and on the length of time for which someone has been coping, this time-out might be half an hour or a couple of days, but it essentially does not involve other people.

When I think of other people taking time off, I think of shopping trips at weekends, of drinks with friends on a Friday night, of meeting up with family on Sundays. I think of holidays in the sun with groups of friends and family, of restaurants, of airplanes, and all I feel is tired.

The only way for me to have time off is to de-clutter all the social activity I have already experienced and spend time alone. In the right situation I can often feel the release immediately. And the repair can happen quite quickly. This is one huge way in which I think this must differ from depression.

It should be so simple, shouldn’t it? I really hope with more awareness we can begin to make it more simple, more acceptable and more allowable because autistic people are misunderstood all the time. It’s okay to need our own thing, our own fix. The most common thing by far I’ve heard other Asperger’s women say recently is how difficult it is getting people to understand and how that has a knock-on effect on their own well-being, self-esteem and mental health. It’s not difficult once you’ve got it. It’s simply a case of accepting a difference.

With a brain constantly fizzing, we don’t get weekends off unless someone says ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

Not everyone will see the definition between austism burnout and depression I’m trying to make but if you can imagine a woman standing at the water’s edge, you can see how she’s not in the same situation as someone who is in the sea. She’s not in the water – she’s close – but she has her feet on the ground and she just needs to walk alone along the wet sand for a while.

Very well put, Rachel. You’re a first-class activist and communicator for Autism and Asperger’s. Good for you for having this level of self-awareness and for recognising what works. Keep those hamster wheel breaks on good order and keep the ‘do not disturb, I’m recharging’ sign polished.

Nailed it! I NEVER thought of things that way and you are so on target. If there is ANYONE who can educate the medical community and “people” about Asperger’s in women in this lifetime… IT IS YOU! Your tremendous gift of writing and your uncanny ability to focus on what is going on in your brain is what this world needs (as do I). You help me personally tremendously but I do not have the ability nor desire to try to help right now after being a nurse for 32 years and “faking” all that time. I am totally spent. Thank you so much for your posts and when you feel you can and want to write I KNOW there are many who benefit from all you are doing by sharing your personal stories, they are OUR stories! Hugs.

Oh, and I’m sorry I should have said: 1. Well done to you for being a nurse for 32 years. that is the best job ever, and 2. I’m sorry you’re so spent. I hope you can find the right way to look after yourself and that you heal and become happy x

Oh I didn’t mean it that way. Just stating facts. HAHA. Nursing was good because I learned something every single day and I didn’t know how hard it was until I was done with it. The faking that everything was wonderful was hard but I didn’t know I was doing it all the time. I wasn’t diagnosed. I always said “i’m the greatest actress in the world” when people asked how I did it so well…now I am just trying to move on and cope and I am not sure YOU know how much of what you say helps me, so I am guessing you are helping others also. I don’t even think about the nursing part anymore, nor do I fake. 🙂

Dear Rachel
I’ve just come across your blog and it has come at just the right time for me. A lot of it rings such a bell with me, that you could be describing my life. I’ve been a bit thrown recently because a psychologist/coach I went to see suggested that I have a lot of Asperger’s traits. I was amazed – I said but everyone tells me I’m a people person, so I must be! I then sat down and wrote all about my life and the reasons I didn’t think I had Asperger’s but when I got the end I thought a) it doesn’t sound that convincing as certain issues like following rules more than other people, being over-sensitive to tastes, etc and not understanding lies/truth and b) the fact I spend ages writing down my thoughts and making lists tells you something!

When I mentioned to a couple of people I know well they more or less said don’t be silly (not quite as harsh as that, but they couldn’t believe it as I’m too sociable, although I still get very anxious going in a shop and asking for things, and feel overwhelmed sometimes out shopping).

I found out two years ago that I had dyspraxia. I always struggled with tying shoelaces, riding a bike, can’t catch a ball to save my life (although that has improved), and it took me three years to learn to drive. I used to get bullied a lot and lacked confidence, although these days I’m much more confident and work with young people with learning disabilities. I’m married now with a daughter of 12, but a lot of the time I feel like a teenager (not necessarily in a good way!) and find it hard to organise my day and housework. I’ve often been accused of being lazy or disorganised, but I think it more a sort of fog and confusion. I work very hard if someone directs me and tells me what I’m doing!

Anyway sorry this is long and rambling, but thank you so much for your blog. Just to know there are other people struggling with the same things (although I wouldn’t wish it on someone else!) is really helpful. I hope this depression/burn-out lifts for you soon. I never understand til I found about dyspraxia/autism that people feel overwhelmed. I’ve often been treated for depression, but feel it isn’t really depression, more being overwhelmed.

Great blog!
This is how I am at this particular moment.
For years I wore what non autistics assumed what I described something to be based on their own perceptions.
Later on I realised we’ve been tricked into thinking they were right and we were wrong. I decided No more! however, even that has reproussions. Just because something sounds like what they think it is – it doesn’t mean that it is. NT’s do not ask as they don’t really want to know / care.

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About me and this blog

Hi. Welcome to a Voice Released.
I started this blog in 2009 to blog my creative writing. It soon became clear I was using it as a form of communication, for not only was I freeing the voices of the characters I created but I had freed my own voice and was learning to share my thoughts and feelings in a way I had found inexplicably difficult through speech alone.
Along with several tiny flash fiction and other short stories I have written over the years, I have blogged about the struggles with anxiety and the discovery more recently that I am in fact autistic.
I was diagnosed with Autism Spectrum Disorder in April 2014, and told that this was the condition formally described as Asperger’s Syndrome. Put simply I am autistic but in a less visible way. It is this very invisibility that prompts me to keep writing about the hidden struggles of Aspies, autistics and undiagnosed autistic people, and to share concerns and often very difficult moments and confusions that can hit us sometimes and leave us feeling all at sea and alone in the world.
I’ve always been obsessed with people, interactions and behaviours. I love to tell stories from the points of view of the characters who visit my head – particularly the misunderstood. I also like to have a rant now and then about society. Sometimes I combine the two!
Having autism and anxiety means that, even though it’s not obvious, I’m always working, always exhausted, always using too much adrenalin and cortisol, and always looking for ways to find peace, to reach out and to manage my health. Writing seems to cover all of these things and brings the satisfaction of creative production and a much needed release of creative energy.
In my other life I run a shop with my husband. He does the people stuff and I do the paper, organising and money stuff. I also have an organic vegetable garden and try to grow and cook as much of my own produce as possible and grow plenty of things for bees and butterflies, while trying to run a home and be a good enough mum to three children between the ages of 11 and 21. I insist on fitting photography into that mix too and force myself to take at least one photo every day. I keep a journal for that on blipfoto.

If you’re interested in my autism discovery and assessment, the blog entries between February and April 2014 would be a good place to start.

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A wonderful serenity has taken possession of my entire soul, like these sweet mornings of spring which I enjoy with my whole heart. I am alone, and feel the charm of existence in this spot, which was created for the bliss of souls like mine. I am so happy, my dear friend, so absorbed in the exquisite sense of mere tranquil existence, that I neglect my talents. I should be incapable of drawing a single stroke at the present moment; and yet I feel that I never was a greater artist than now.